Frequently Asked Questions
1) The CASD title and mission statement include the ideas of adherence and service participation. What do they mean? Adherence is a word often used by medical and related professions to communicate whether people with serious mental illness are participating in treatment as prescribed. For example, not taking medications as indicated by the psychiatrist is a failure to adhere to treatment. Service participation is a value-neutral term indicating the frequency and depth in which a person partakes in mental health treatments. Through using the term “service participation,” opting out of treatment does not have the same negative implications as the term “adherence.”
2) CASD counters ideas about adherence with terms such as self-determination and personal empowerment. What do these terms mean? Personal empowerment is prominent in the recovery paradigm of serious mental illness. People in recovery report some sense of personal power or agency in their life. This means they have control over their life goals and the mental health services meant to help achieve them. Many people also report their recovery resulted from use of services outside the traditional mental health system and felt empowered to choose these service alternatives. Self-determination is the beliefs and behaviors that represent empowerment and recovery. In terms of the CASD, self-determination represents people’s choice and control over all conceivable treatment options.
3) Who should decide whether treatment is beneficial? What role should self-determination play in decisions to discontinue treatment? The person with serious mental illness should have absolute and complete control over treatment options. This does not mean service providers are out of the picture. Providers may assist in decision making by providing information about mental illness and possible treatments. They might also help the person to make sense of the costs and benefits of a specific treatment decision. But, ultimately, the decision lies with the person. Choosing to discontinue treatment is as valid and legitimate as choosing to participate.
4) What role should provider coercion play in promoting treatment? Service providers have the ethical responsibility to (1) promote consumer well-being and (2) foster self-determination. On occasion, these values lie in opposition to each other. Under low risk situations, providers may counsel and support consumers to help them reason through decisions regarding whether to continue, discontinue, or change treatments. More rarely, providers may have to exercise their professional responsibility and override the person’s decisions should he or she be a danger to self or others. In these situations, service providers act to prevent the person from hurting him or herself by pursuing more restrictive treatments. This may require civil or criminal commitment to inpatient or outpatient treatment depending on the state or jurisdiction.
5) Does self-determination vary with the person’s impairment? The decision making abilities of some people are hindered by serious mental illness. They would benefit from therapies and supports that help them make sense of treatment options. However, research suggests most people with thought-related problems are able to make decisions about their medications and other treatments. Moreover, people deciding to opt-out of treatment now, can return to it later if they so choose. Unless it is an issue of danger to self or others, the person maintains ultimate control over treatment.
6) What role does family play in treatment decisions? Although the person has final responsibility for treatment decisions, parents and other family members have an interest in the decisions. They are impacted by treatment; e.g., by the person becoming more distressed and upsetting family holidays. Their preferences will impact treatment choices. Alternatively, treatment choices impact family relationships. They may, for example, choose to not let the relative come home for weekend visits when the person selects an option with which they disagree.
7) What practical strategies can providers implement to enhance consumer participation in services? Shared decision making (SDM) is one example, perhaps best known and most often evaluated. SDM rests on three principles and skills. (1) The service provider helps the person make sense of the costs and benefits of specific treatment options. (2) The professional or paraprofessional provides information so the person better understands specific costs and benefits. (3) SDM is fundamentally a social enterprise between the person and treatment provider. Hence, actions that enhance engagement facilitate SDM.
8) What are advanced directives (ADs)? Another practical strategy to enhance consumer participation in services is advanced directives. Put simply, the person when not distressed or confused decides what kinds of treatment they want when they become acutely ill. These may include medication changes and hospitalization. Typically, ADs include the name of a support person (often a family member) who can guide person and treatment providers through specifics of the directive. While ADs are legal documents in some states, their power arises more as a consensus document among stakeholders, rather than a mandate.
9) How does adherence and self-determination vary with diversity? Ethnicity is important here due to the significant importance of cultural perspective. Issues of ethnicity might also be affected by disparities in family income and community resources. Other important personal factors include sexual orientation and religious background. Unfortunately, research suggests programs rarely incorporate diversity into considerations about adherence and self-determination. Interestingly, self-determination may not be culturally congruent with people from other, perhaps more collectivist, cultures.